Retention Enemas

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Guest

Postby Guest » Sun Jun 06, 2004 1:18 pm

I saw in a nutritional book that there is a distilled water mixed w/powered form of acidophilus or primadolphilus (non-daily) that can be injected w/enemas. There also was a neo-flora that can be used. Health food stores may have it? Is this an outdated theory now or has anyone tried this. It seems like some benefit could be derived? Maybe it would not live long enough to do any good? Over a billion live cultures are supposed to be in these. I will check w/a health food store just for info. <BR> <BR>CJ I feel like you re: the infusions. No one knows unless they have it. Infusions may be in my future. I would dearly, dearly love to TALK to someone who has had the infustion treatments. Have you contacted Borody's office yet? I do not like to be on any pills either. <BR>How did you get cdiff?

Guest

Postby Guest » Mon Jun 07, 2004 8:56 am

my integrative med. doctor knows all about the probiotic infusions and has asked me to consider them before the human fecal infusions. He told me that the latest research has shown they are as effective as fecal infusions. I don't know where you live, but if it's anywhere near NY, I'd recommend my doctor. He's fantastic and knows alot about c.diff.

Guest

Postby Guest » Tue Jun 08, 2004 12:25 am

Pattik, <BR>Did you dr not recommend the fecal infusions? <BR>Do you know how the human fecal matter is refined for use. Is it just the colonic washings that are used? <BR>The Prescription for Nutritional Healing had an enema retention info in it for flora restoration. <BR>A search on the internet on probiotic retention enema brings up quite a bit. <BR> <BR>I asked my PCP today and she thought that they might irritate the colon. I may ask my GI tomorrow. I wonder if the live bacteria count would be high enough to control diff? <BR> <BR>If anyone knows about these retention enemas, please post!

Guest

Postby Guest » Tue Jun 08, 2004 8:50 am

Ellen, <BR> <BR>It's my understanding that the fecal matter is simply put in a blender with saline and psyllium husks (I don't know the ratio of each) and then used in an enema which is recommended to be retained for 5-6 hours. You do have to clean your colon before the first one (the same thing you do for a colonoscopy). The probiotic enemas work the same way. I can't imagine that they would be any more irritating on the colon than c.diff! My doctor is willing to order the test for my husband to be my donor, however, he believes that a probiotic infusion with HMF Replete will be just as successful as a fecal infusion. He is basing this on the latest research done on probiotic infusions. Keep in mind that HMF is a human strain probiotic, which provides a better chance for re-colonization in your gut. If the HMF infusions don't work, believe me, I'm doing the fecal infusions. I absolutely refuse to take another round of Flagyl or Vanco. This round of vanco is doing me in - I feel worse now than when I just had the cramping but I can't go back and un-do 5 days worth of vanco, so I'll stick it out (37 more days on this stuff!). I'm sick of dealing with c.diff so one way or another, it's going to be gone!

Guest

Postby Guest » Tue Jun 08, 2004 9:37 am

Ellen, <BR> Email me <!-- BBcode auto-mailto start --><a href="mailto:Metropd22@aol.com">Metropd22@aol.com</a><!-- BBCode auto-mailto end --> . I will tell you whatever you want to know about my experience with the infusions. They worked for me and I was "cured" right away. It has been 1 year now and I am OK, no residual symptoms, and I can eat normally. I took another antibiotic recently, and although it wasn't easy, I did survive it. Sharyn no longer consults by email, you have to call her and make an appointment for a phone consult. I guess the volume of emails got to be too much for the clinic.

Guest

Postby Guest » Tue Jun 08, 2004 4:08 pm

Ellen and Patti <BR>I tried to post a message to you on the tail of your last discussion but my computer would not send it. <BR> <BR>I had an appt with Dr. Borody as a phone consult with my dr at the begining of May. When I called the clinic to tell them what I was interested in they said I needed an appt. I had already tried emails and new they were no longer working through them. No one told me he would talk to another dr for free. I waited over 2 months for the appt. Been comtemplating this since I went off the vanco in Jan. Added 3 way calling to my phone line and took the first available appt which was in the middle of the night. <BR> <BR>Anyway long story short it was so worth it. He was great to talk to. We asked all kinds of questions and he was patient, kind, listened to everything we had to say, convinced my dr who I think was on the fence about this and was so funny too. He then emailed my dr everything we needed to know. <BR> <BR>To be honest I wanted to do his protocol to kill a parasite I have so I am a little more complicated. But he was convinced beyond a doubt that my last c.diff tests were a false negative and that we should address that first. At this point who knows what is making me sick except that after 15 years of it I am willing to do anything to have a life. <BR> <BR>My consult with him was $170 american dollars. I have an official one set up wtih Sharyn tommorow for any last minute questions I thougth I might have on the infusions but I have already spoken to her once. She was great help with lots of information. <BR> <BR>I am still, however, waiting for my donors tests to be done. I can not use my husband and it was not easy thinking of who to ask and then asking them and educating them. I have been gathering all the stuff you need for this adventure. Hope to start in a week or so. <BR> <BR>Sharyn referred me to a company in america for the "kits" they have had the last 4 or 5 people use. I finally talked to someone yesterday - we had been playing phone tag. I ordered extra so I do not remember the exact amount but it came to around $330. <BR> <BR>By the way take Dorothy up on her offer. She has really been a great support for me in getting prepared for all of this.

Guest

Postby Guest » Tue Jun 08, 2004 9:09 pm

Karenb, Dorothy, Pattik <BR>Are all the tests done the same for donors? I was at a lab today and asked them about fecal testing and they said that there is a very, very large book of tests that can be run on specimens. I wonder how the dr determines which tests to run and if he could leave out some type of problem? <BR>Thank you Dorothy, Pattik also. There was a post in '03 about HMF Powder by Genestra. This lady says that it kept her from ever taking Vanco or Flagyl again. Its from a human strain. I found them on the internet; may email them.

Guest

Postby Guest » Wed Jun 09, 2004 8:12 am

Ellen, <BR> It is a screening for infectious diseases (bacterial and viral) and parasites. It is both blood and stool, and about 14 or so different tests. It can be expensive if insurance won't pay, but they usually will. Sahryn recommends both donor and recipient be screened. <BR> I never used HMF replete, but Patti has. She can tell you all about it. I use Primal Defense and have had good results with it.

Guest

Postby Guest » Wed Jun 09, 2004 1:23 pm

karenb, Was it difficult to get your GI to cooperate? <BR>I am at least going to call Borody tonight and set up a cons since it took you that long. I've been calling around just to see if i can get some of the things needed. Does Sharyn give you the list of supplies at the very beginning of the consult? Trying posting that message to me again, if you can. <BR>Pattik, was you dr. cooperative? I plan to ask mine today at my appointment. All he can say is no. Only thing, I'm wondering if I can find one that will cooperate. Making an appointment w/each dr. just to ask could be time consuming and expensive. Any suggestions for finding one no matter where one lives?

Guest

Postby Guest » Wed Jun 09, 2004 4:28 pm

Ellen, <BR> <BR>My first GI said "absolutely not - it's too experimental!" My second GI said "I've heard of it but it's really the last thing we'd do. Besides you really have to know your donor." My integrative medicine doc said "Ultimately, it's your decision to make. I don't consider it a treatment of last resort and I will assist you in whatever you decide to do." So, guess who is ordering the donor screening tests for my husband - you got it - the integrative doc. I'm convinced that practitioners of traditional Western medicine don't want to hear about this because it wasn't thought up by someone here in the States - just my opinion, for what it's worth.

Guest

Postby Guest » Sun Jun 13, 2004 9:40 am

Hi Ellen, <BR>I totally agree with Patti. I have tested negative for years by conventional methods. Have done the colonoscopy, upper edoscopy - all normal. I finally started seeing 2 different alternative Dr's of internal medicine within the last 3 years. I have found many many many pathogens and have made progress with them. Compared to the shelf of anxiety and antidepressants I was given by the regular gi's I saw who told me to relax, take up yoga, it was all in my head, I had talked my self into being sick etc. <BR> <BR>I found the local alternative Dr I am seeing (the one who agreed to the infusions) by calling Great Smokies Labs. They will give you a list of dr's in your area by zip code that use their tests. I got a list of about 12 or so practioners ranging from regular M.D.'s to nutrionist to chiropracters. I called almost all of them and asked all kinds of questions. This was back when I was naive enough to think insurance should pay for everything. <BR> <BR>I am lucky in the fact that my current Dr really wants to help, listens to me, is patient and has been in and out of my healing cirlce long enough to see other Dr.s give up on me and tell me they had nothing else to offer. He believes in the false negative for c.diff especially after a positive test and he also believes in yeast overgrowth. <BR> <BR>I approached him armed with infomation. I had Dr. Borody's website, articles he had written and the idea that we would consult with him so he would help us through all of this. Plus testimonies of the success stories from this message board. My Dr looked at it as if I had nothing to loose and a life to gain. Once we had the consult and talked to Dr. Borody he was ready for it all. <BR> <BR>But I have had a set back in all of this. I have everything ready but my donor just tested positive for something. This is why screening your donor is just so important. My donor eats very healthy compared to the normal diet. Whole foods - fruits and veggies whole grains, organic foods, tons of cultured foods especially organic cultured goats milk yogurt and kefir. Not been on an antibiotic in over 10 years and has very healthy regular bowel habits. And a postive parasite - obviously asymptomatic but still nothing I would want to put in me. <BR> <BR>So I spent 24 hours crying and binging on foods that would make me sick. And sick I was last night. I was just so depressed. I am so convinced that this is going to help heal me that i was making plans for the future. Small things like eating fruit salad at a barbeque this summer - I have not attend a social function and eaten any food in over 3 years. I have just stopped going to anything this last year altogether. It was just too much mental torture. Ugh... <BR> <BR>Back to the drawing board so to speak. I am not sure who else to ask. My husband does not qualify we already know. Finding someone who can accept this idea and take all the prep and diet seriously is hard. The thing is that there are probably many people I talk to everyday that could work but this is just such a hard thing to ask for. <BR> <BR>If you want to ask any more detailed questions or just vent feel free to email me at <!-- BBcode auto-mailto start --><a href="mailto:braun09@yahoo.com">braun09@yahoo.com</a><!-- BBCode auto-mailto end -->

Guest

Postby Guest » Fri Jun 25, 2004 11:16 am

Pattik, <BR>Are you using the HMF Replete or the Powder? <BR>Also, have you given any more thought to the probiotic enemas?

Guest

Postby Guest » Fri Jun 25, 2004 12:22 pm

Hi Ellen, <BR> <BR>Right now I am taking the HMF Superpowder - two half teaspoons a day. At the end of my vanco taper, I will go back on HMF Replete for a few weeks (it has an additional strain of bacteria and a higher colony count than the powder). As for the infusions, I've given nothing but thought to them. I provided my doctor with the contact information for three physicians who are familiar with the fecal infusions, in the hope that he will agree to order the donor screening tests for my husband. Because I am dealing with a low level UTI, I am having a cystoscopy on Monday which means I'll have to go on some type of antibiotic to get rid of it. This is extending my vanco taper by an additional week. I'm staying on the twice a day dose for two weeks instead of one, so that I can get through the medication I'll need to eliminate the UTI. I'm assuming I'll take Cipro for two days and I'll really need to take the vanco with it so that c.diff doesn't rear its ugly head again. I haven't given any further thought to the HMF Replete infusions because there are only three strains of good bacteria in HMF Replete as opposed to over 400 strains in the human body. It makes more sense to me to pursue the fecal infusions as they appear to be the greater chance for cure of c.diff. How are you feeling?

Guest

Postby Guest » Fri Jun 25, 2004 12:54 pm

Pattik, <BR>I did not know that if one were on vanco and needed antiobiotics that it would be safe to use them. Does that apply if anyone absolutely needs antiobiotics? I would like to get some dental work so maybe I should go while I am on 2xday vanco. I can't think of the names of the dental mouth deadeners but do they aggravate cdiff to your knowledge? I've had a cleaning w/topical deadeners but it didn't bother anything. <BR>What are your UTI symptoms? <BR>BTW Are you spacing you vanco 6 hours apart? <BR>Three strains vs. 400 - -- Yes, I think of the infusions very frequently also.

Guest

Postby Guest » Sun Jun 27, 2004 10:12 am

Ellen, <BR> <BR>If you need dental work done and it involves having to take an antibiotic, I would find out which antibiotic you'd need to take and then check with your GI to be sure it's okay. That's what I did - just to be sure there would not be an adverse reaction because of the vanco. Right now, because I anticipate that the urologist will put me on an antibiotic when I see him tomorrow, I am continuing my two vanco a day dose. I take them 12 hours apart to try to have a steady dose of medication and also to allow more time for my probiotics to work. So far, no adverse reactions to anything. I will drop down to one a day this Thursday and then one every other day for a week and finally one every third day for two weeks. My last vanco will be on July 30 (which is also the first day of my mini-vacation) so at least I'll be able to go away for three days without worrying about becoming symptomatic. I am hoping my doctor starts contacting the doctors who have a previous experience with the infusions. I'd like to have the donor screening prescription in my hand by the time I finish up my vanco but who knows. This c.diff experience has given me a whole new perspective and attitude about the medical profession. How are you doing? What dosage are you taking now/


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